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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

Post asd closure signs to look out for

Hi, I actually am looking for an answer to understand what signs from the heart should be considered as needing medical attention and what side effects do i have to live with. I have noticeable pain these past few hours/ days It is in the heart and not the whole chest. Additionally, I feel jabs of pain sometimes when I move about. Sometimes i get breathless. I cannot point to specific body movements but sometimes i can feel the device or something to that effect as though it might want to come out. One night as i turned in my sleep it was as though it would tear or something.My recent check up with the doctor resulted in " everything is fine. your surgery was wonderful". Hence, i am here as I dont want the doc to suddenly treat me as a difficult patient. Plus I dont really want to go to them all the time. Its been a little over 2 months since my surgery. It was not OHS but through the artery- balloon surgery. Thanks

Hi ash. I had my asd closure using the occlutech device last sept 16 2016. Im taking aspirin once a day and plavix once a day. I had my 2d echo already and everything was in good place. Just 5 days ago i felt something on my lower ledt chest down to my waist. I called my doctor about it because I was scared. He told me im on my way of having an ulcer. This was maybe due to the anti blood clot medicine i am taking. I was adviced to stop taking aspirin and was prescribed with flomatidine.

Ashish, really, if you are worried enough to post here, you’re worried enough to check this out with a doctor. I don’t think cardiologists see post-ASD patients with pain as difficult customers. Please check this out with your doctor.

And don’t go away! Come back and tell us how things have turned out for you.

Seenie

Hi Seenie,
I did not mean to come across as worried. I just posted as i noticed others too have similar symptoms of pain in the heart. It feels really silly to hear a doc tell me i am fine and i still have to live with the pain and other weird feelings.

Worse, if something big comes up, but i will face it. Oh man the docs made it sound so simple and sunshine like. I thought life would be normal . I am here so i can learn from others experience too.

Cheers
Ashish u

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Hi ashish, Wondering how you are doing and if your problem was resolved. Hope u are much better. My grandson had asd closure surgery, OHS, last summer. Full recovery took longer than we had expected.

Hi,

So nice of you to reach out. I did get a second opinion and tests. All show things are good. I was overweight hence symptoms of shortness of breath.

I feel ok now. But while sleeping i cant
turn to my left as i feel uncomfortable.

I do get some pains occasionally or feel the device perhaps due to sudden body movements.

Regards

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Ash-
Wondering how you are feeling now? My husband had his pfo closed with the amplatzer device via catheter on Sept 5th, he is experiencing the EXACTLY same symptoms you are describing. Pain and uncomfortable when laying on his left side, also his left arm gets tingly as well. He says at times he’s sure he can feel the device and with sudden movements it feels like it’s tearing. Very random pains in his heart, almost sharp pains. We saw the cardiologist today who did not seem concerned with the pains he’s been having and stated there is no way anyone could feel the device as the heart does not have pain receptors but my husband is sure he can feel the device. He’s never experienced any of these symptoms prior to the pfo closure. I find it very interesting he is having the exact same issues you described. Looking for any answers and also wanted to see if these pains ever went away? Thanks :slight_smile:

Hi Shaney, I read both your emails and am responding here. Hope that is ok with you. Quite honestly, I find the pain, discomfort, sharp pain etc are all part of my life now. Having said this, you should know that I also get breathless very easily. My doctor says it could be due to me being slightly overweight. So I am trying to lose weight and go for walks and do light ab exercises. If breathlessness still exists then I will get the tests done to further investigate the matter.

As a result of exercise I think I am getting in shape and the pain has reduced to a certain extent. I absolutely cannot sleep on my left side and this has not changed for me.

The other pain etc is very troublesome on some days while there are a few days when I do not feel it much.

My cardiologists did not mention that the heart does not have pain receptors- perhaps that is why they think my pain is imaginary and they have nothing to offer. This is really strange as I seem to be the only vocal member who keeps writing here about this pain etc that I feel. In all fairness I have made little efforts to find and read a lot of the older posts where earlier patients mights have posted similar threads.

In a strange way I am comforted by your post that I am not alone in this experience and that you are a concerned wife. Let me assure you that I dont feel comforted that your husband has the pain. Perhaps he is slightly overweight like me? If yes, try to lose the extra pounds. One can say that a lot of people are more overweight to down right obese but then they might not have ASD which we do. As a result of this compromise the heart tends to get burdened more is what I am going to conclude in a few weeks time as I lose weight and if the symptoms go away. Else it just might be further deterioration in my condition and I will have to come to terms with that.

It was really nice of you to reach out. Please do check in as and when you feel.

Have a nice day.

Ashish

Hi Ashish.

With regard to finding relevant older posts, have you tried searching via the ‘magnifying glass’ symbol to the left of your avatar on the top blue banner?

Christina from modsupport

Hi Christina, Thanks for reaching out. Yes, I am aware of it and did find some posts but I did not get into it a lot as I felt they were closed and I wanted active conversations. But it might be worth a shot to write to old posts and see if they respond? Thanks

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Hi Ashish. Yes, sometimes it is worth replying to old posts to see if the original posters respond. Plus of course once you reply the discussion will show up as current which can help revive a topic. I think it’s always worth trying anything really!

Christina

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Ashishm9,
Thank you so much for getting back to me! Yes, I too have been searching to see if anyone is experiencing the same pains he is having and besides your post I have not found any that seem to describe the feeling you both are having. It has made me feel better to know my husband is not alone in feeling like he can feel the device. He is about 40lbs overweight but prior to the surgery to close the pfo he did not have any of these issues. The closed his due to a stroke he had in June that had no other causes they could find besides the pfo so all the Dr’s agreed that closing it would be best. He says the pains are something he can learn to live with but I would really like to find out WHY this is happening. Clearly this is not something you both are just imagining :blush:

Yeah ,prior to my inferior infarction, I had short was of breath at work ,scard the crap outta me ,after carrying ,equipment up second floor, finally caught my breath ,!!! Erniebuddy

I have a question — will we ASD ,patients have a shorter life span ? Guess I made it to 55 ,can’t complain, hope I go to the other side when I’m having a adventurous dream !!!

Does ASD ,cause palpitations, tachycardia,angina and mind in a fog,passed two years ,can’t remember like a wall there blocking ,my memory effort ----- or is this just getting old ----- and body starting to die — reality coming again ------ erniebuddy
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Hi Shaney31, how is your husband doing these days? I just thought I would check in. My breathing continues to be a problem and I am getting a little tired of it quite honestly. Regards Ashish